Paying for improved meds not available under NHS

Please bear with me while I relate my cancer experiences - I will get to the point eventually! I am in my early 70s and live in Scotland.
Seven years ago, I went through gruelling treatment for breast cancer, involving surgery, chemo and radiotherapy. It was very tough, but I got through it and I have been living a full life since then.

I was shocked, then, to recently be diagnosed with cervical cancer. It is squamous cell, unrelated to my previous breast cancer. My treatment will consist of 6 weekly infusions of Paclitaxel and Carboplatin, followed by 5 weeks of chemo radiation ( with Cisplatin) and then 2 stays in hospital for brachytherapy.

I had my first chemo infusion on Wednesday and have felt pretty awful since then, with terrible fatigue, some other mild side effects, but generally feeling yuk. I am due my next treatment on Wednesday and it seems that there won’t be much light relief before then. I had hoped for a few good days to have some normal time. It just seems a bit overwhelming at the moment.

My question is this - I know that the NHS is continually under financial pressure, and I am so grateful that all of this treatment is available to me. However, I sometimes wonder if there is anything available in the way of improved medicines etc for the treatment/side effects which are not generally available on the NHS, but can be purchased privately? Something that would make a difference and help me get through this? Or am I clutching at straws?

Hi @Jent

I’m sorry to read you’ve had another cancer diagnosis…that’s tough for you to cope with. But I don’t personally believe there are “medicines” out there which are being kept from us because of financial pressures on the nhs.

You might get replies telling you about miracle protocols in this group and others. Where is peer reviewed evidence for their success? In my years with cervical cancer I’ve seen several ladies try “alternative medicine” to treat their cancer, foregoing conventional treatment such as you are having. To put it bluntly, they are all dead.

I’m presuming your cancer is already advanced since you are having the chemo cocktail prior to chemorads. In my opinion, there isn’t going to be anything you can buy that is going to give you a better chance at controlling this disease than what you are having to do now.

Your team should be proactive in managing side effects, so make sure you tell the everything. If you do decide to purchase something unproven you need to tell them in case it will react badly to your current chemo. I don’t believe the nhs is hiding any miracle drugs from us on the basis of cost, and I am speaking as someone who has been through advanced cancer under the nhs who is still here to tell the tale.

Have you thought about who would administer any other treatments you could find? Are you prepared to leave the nhs to follow another route? It’s a very personal decision of course, but I know what I would choose.

Thank you for your response. I do not expect a miracle cure and certainly would never meddle with untried and untested quack remedies. I am very grateful for the treatment that I am getting. I am merely posing the question of whether there might be helpful meds out there that we are either not aware of, or that we are not offered because of the cost to the NHS.

I understand…my belief still holds that we are given the optimum treatment for our own individual circumstances, and I’m not sure that patients would know if there are other things out there which can be purchased, while still being recognised conventional treatments. Have you asked your oncologist?

I guess I’m just struggling to go through chemo etc for a second time. I am only half-way through the first week and I hoped it would have been easier! I am just looking for ways to help. Clutching at straws! I guess I just have to face up to it and get on with it.

1 Like

This chemo will likely be tougher for you than the Cisplatin given with radiation, which is something to hang onto. But it’s early days…just make sure you tell your team how you’re feel to see if they can help. There are many different anti nausea meds to try for example. Hang in there!

Thanks. I can do this!

2 Likes

You can-and that’s the best attitude to have. It really makes a huge difference in how you cope, and medics have told me how much better patients who are positive fare in treatment and recovery. I honestly wish you all the best with this-it’s my 4 year anniversary today of surgery for advanced cervical cancer and I never gave up, even though there were times I was desperate to.

I had keytruda with the same medications you mentioned and it worked well for me, although I know keytruda causes issues for many. But I managed treatments well and actually gained weight and kept working during the treatments. I developed an allergy to cisplatin at the very end of my treatments

Thank you. I’m glad you found something that worked for you. I haven’t explored that type of treatment and so I don’t know in which circumstances the drs would offer it.
At the moment, my main problem is the overwhelming fatigue. I am due my next treatment on Wednesday but am still struggling to get out of bed!